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Monday, March 28, 2011

Baby Joseph: I don't know what to think

Below I have links to two stories and one video about Baby Joseph.

If you have never heard of him, let me give you a little overview. Joseph Maraachli is a 14-month-old who has a progressive neurological disease. He's been in pretty bad shape since he was born. He has trouble eating and breathing. He's from Canada. In Canada, a hospital (London Health Sciences Centre) wanted to remove him from life support and allow him to die. His parents did not agree with that decision. He ultimately was accepted to come to Cardinal Glennon here in St. Louis to get a tracheotomy and he will eventually get to go home. It is felt that this way, even though the tracheotomy will not prolong his life, he will be able to live the rest of his days more comfortably at home with his family.

According to the Ethical and Religious Directives for Catholic Health Care Services:

"56. A person has a moral obligation to use ordinary or proportionate means of preserving his or her life. Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community."

In the case of Baby Joseph, this directive is complicated in that the parent is the one making the decisions, the patient obviously cannot make decisions for himself.

I do not think it is unreasonable for the parent's to wish for the child to die in the home. Unfortunately, many hospitals are still unable to make a "home-like" atmosphere for those dying. It is hard to adapt to the different religious and ethnic practices of every patient that dies in the hospital. And some situations just don't lend themselves easily to allowing the family to be close by and to give the dying and the family their personal space.

I do not know enough about the baby's situation nor enough about medicine to form a definite opinion as to whether giving him a trach was the best idea. I do know from personal experience that a trach is not always the best option. It is not a pleasant thing to have. It gets clogged. It's uncomfortable. I am sure, however, that it is better than being hooked up to machines in the hospital. It is definitely better for the parents to not see their baby hooked up to machines in the hospital. I do not know if the tracheotomy was "proportionate means," but people (who I would hope know better than I do) think that it is.

One thing that does bug me about this is that Baby Joseph's parents had another baby with a similar issue only 8 years ago. Why did they get pregnant again?

Another thing that bugs me is that he has been used as a poster-boy for the pro-life movement. Now, the fact he was a poster-boy probably saved his life. I am grateful for that. However, misinformation abounds. His life has been saved for a few months and he will be able to have the most graceful death anyone could hope for, but this was not a case of the evil socialized medicine wanting to kill an innocent baby. Nothing in life is ever that simple.